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Hello all! Some information maybe?

Short synopsis of myself: 36 yr old female (widow with 3 kids) presented with the facial rash (large, red, raised, itchy, burns in sunlight) and for 5 years, no one could tell me what it was. Did not look like mylar or butterfly rashes. About 4 years ago in 2009, after 2 biopsies at 2 different times - the results came back 2x as tumid lupus. That being said, ANA has always been negative and no other symptoms appeared. Treated with Prednisone (as needed) and Plaquenil for about 2 years - then I lost my job and my insurance. I also had no more rashes until this year. However, now I have the rash again and a number of other symptoms. I have an appointment with my dermatologist next week and I have been doing some more research into lupus symptoms. Now I am terrified. Granted I did all of this same research 4 yrs ago when I got the original dx, but obviously I had no other symptoms and it did not show in my blood work so I kinda blew it off. Low chances of it developing further was what I understood from my research. Conclusion: sunscreen and hats - OK, I figured that I could do that.

Now though in the past 12 months, I have had all of the neurological symptoms, but it never occurred to me to think lupus. I started having panic attacks at work, depression, RAGE issues, mental confusion/fog, cognitive dysfunction, etc. Also having the joint pain, extreme fatigue, swelling in legs/ankles, massive headaches, night sweats, stiffness/pain in neck (continuous for 8 mos), etc., etc., etc.! I know that there are others, but I forget. You guys already know. I will have blood work done Wednesday and then I guess I will know for sure, but my question is has anyone seen this type of situation develop into a full blown diagnosis before? From rash with no other symptoms, but definitely lupus to real deal lupus? That's what I always told people about the rash that it was lupus, but not "real lupus".

Anyway, thank you in advance for allowing me to introduce myself and pick your brains.

Hi Ivory;
Welcome to our family! Unfortunately, every type of Lupus is real Lupus. Also, the disease's most notorious symptom is the fact that it changes. Someone diagnosed with severe Lupus may have their Lupus symptoms subside and then be categorized as having mild Lupus. Unfortunately, the opposite is just as true! A person diagnosed with mild Lupus can suffer symptom changes and find that they are now in the throes of severe Lupus with multiple symptoms and, for many, overlapping diseases. So, your situation is not uncommon.
As you are suffering from so many symptoms right now (which could all be related to Lupus or some may be related to another Auto-Immune disorder), it would be beneficial for you to be seen by a rheumatologist in order that appropriate tests can be run and effective treatment can begin.
I wish you the very best and please know that we are here for you!

Thank you for your response. I guess when I said "not real Lupus" - I also might should have said that my ANA was always negative even when in a full blown rash attack. It is scary, but I see the derm today and she will do the labs. I also got a referral to the rheumatologist, but no appointment as of yet. I just want to stomp my foot and pout about this though -- my poor kids have already been through the death of their father, who had sickle cell anemia (but managed it ok) - until he was stricken with Guillian Barre (AI) and that seems to activate EVERYTHING. It is hard to look OK and feel like a hot mess. It doesn't really matter to me if everyone else in my life fails to understand how I feel, but I sure hate to think my kids are going to look at me and be like, "Boy, as soon as she gets home from work, she drags herself into the bed--super lazy!" Oh well, it will be what it will be and nothing can change that. I should have some answers soon enough. I'm very glad that your website is here though - I have learned a lot.

Just as an update, the blood work from the dermatologist was negative for ANA. However, since both of the biopsies done on my rashes came back as lupus, the rheumatologist (new to me doctor) took like 6 vials of blood (I know C3, C4, anti-DNA, were on the list -- I made sure to get a copy from the clerk, but I have already lost it -- jeez...), urine and x-rays of my neck/spine and hip. Those are my worst pain spots. Even though I feel like my symptoms are mild in comparison to many, many others - I was so relieved that she didn't just hand me my hat when she saw the negative ANA results. Should start the Plaquenil from the dermatologist today since my eye exam was OK. Go back to Rheum in 2 weeks -- and so begins the quest for diagnosis....

So glad they are staring the plaq. It is good to get that started as early as possible. I would also like to say one other thing I think you need to hear. You made the comment about yours "not being as bad as others". That is absolutely beside the point and we don't do a "mine is worse than yours" thing here. No matter what the degree, Lupus and Auto Immune diseases usually change your life. That is what makes us family. That is what we understand. No one cares who has what symptoms, if one person has a mild form or a more severe form. What we care about you and what you are going through.

Please don't feel like you need to feel like what you are going through matters less than someone who has seizures with theirs because it doesn't. What matters is that your life has been altered in a way few understand just know you have found a place that does.

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

Hi Ivory,
I wanted to say hello and you are not alone. Though our symptoms and life experiences are not exactly the same, I think many of our anxieties, worries and struggles are similar. I was most worried about telling the kids. (16 & 13) I didn't tell them for a long time, probably longer than I should have let it go. I just had to deal with my own learning curve, and all the adjustments and really wrap my head around the mental stuff that comes along. I just didn't want to have a conversation leaving them with questions, fear and uncertaintity - all the things I was having difficulties with as an adult. Once I did tell them, they were concerned, but channelled that into becoming incredibly helpful. I've never felt they thought I was being lazy, or any of the negative associations I get from strangers.
I wanted to share to express sometimes worries aren't necessary, but we don't/can't figure that part out until it's in hindsight. I wish you the best at alleviating your own worries, and those worries you have for your family.